'Death, like sun cannot be looked at steadily'

Maurice Manning

Issue 392, vol.98, Winter 2009

Perhaps we simply do not want to look steadily at the fate which for some older people precedes death : they find themselves confined often in an old building, in an open ward, with commodes and just curtains - sometimes alone, frightened and in pain. The aim of the Forum on End of Life in Ireland is nothing less than to collect views from the whole gamut of stakeholders; and to bring about change – by having the public face up to all the hard questions, viz: -

Are we simply ignoring the evidence of the cost-effectiveness of palliative care ? Are we adequately recognising the additional costs of full-time care in the home (for the terminally ill) ? Are the welfare grants to assist with the cost of funerals adequate ? How equipped is each of us individually to witness pain, and to give of our own time and selves – instead of, in a kneejerk response, steering people towards bereavement counselling ? Are we fully aware of the drab and unimaginative nature of our public cemeteries (to say nothing of mortuaries) ? Are we prepared to have Christian symbols removed from (semi-)public spaces where agnostic, humanist or Muslim families gather to mourn their dead ? Who is driving the increasing trend towards embalming ? Are we alert to pressures which may be exerted by the international trade in body organs ? Are we ensuring that the media portrayal of suicide follows guidelines ? [What emerges from the 2007 nationwide public opinion survey and the focus groups with the public, is that general awareness levels are quite low – even of several standard terms for end-of-life treatments].

A ‘Joint Declaration and Statement of Commitment on Palliative Care and Pain Treatment as Human Rights’ was issued in 2008 by palliative care advocates. In the cause of a full range of legal and human rights, the hospice movement has been campaigning for patient support services on issues like : making a will, planning guardianship of children, gaining legal access to social benefits and income supports.

Freedom from treatable pain is fundamental to health care – and is itself a human right. While most people would agree with any measure that lessened the pain and discomfort of the terminally ill [according to the focus groups], they would be quite reluctant to give approval for treatments which could end life prematurely – believing that this might one day lead to more general euthanasia (and fearing that mistakes might be made). According to one clinician, “families want the clinicians ‘to do everything’ for their family member, but they really have no idea of what ‘doing everything’ really involves” – and by that stage the patient is often past dialoguing. So people’s reluctance to leave their own directives (e.g., concerning resuscitation) is ill-advised.

Maurice Manning is Chancellor of the National University of Ireland and President of the Irish Human Rights Commission.

This article is based on his keynote address at the Inaugural Session of the Forum on End of Life in Ireland; March 11^th 2009.